Challenges and Choices
The IU National Center of Excellence in Women’s Health is
committed to provide better access to health care for all women,
especially minorities and the medically underserved.
Consider this scenario: a middle-aged Caucasian woman wakes up
one morning and, while performing self-examination, discovers a
lump in her breast. The mass is small but well defined and clearly
requires the attention of a qualified health-care provider. The
woman calls her primary care physician immediately and is given
an appointment later the same day. A supportive colleague at the
college where she teaches agrees to cover her afternoon class. As
frightening as the experience is, the woman trusts her doctor and
feels comforted that diagnosis and treatment will begin without
delay.
Now consider another scenario: a middle-aged Hispanic woman wakes
up one morning and inadvertently discovers a lump in her breast.
She rarely sees a doctor and has no knowledge of breast self-examination.
She has never received a mammogram. The lump worries her, but her
English skills are limited; she’s not sure if she could describe
the problem over the phone to an English-speaking health-care provider.
There are no women’s health clinics in her neighborhood, and
she is too embarrassed to discuss her condition with the male physician
who sometimes treats her children. She knows that a lump can signal
a serious medical condition, but she tries to put her worries aside
- she can’t afford to take time off from her hourly job to
pursue treatment. At least not this week, and probably not next
week either.
As these two scenarios suggest, formidable obstacles still remain
on the path to comprehensive, high-quality health care for all,
regardless of sex, age, race or socioeconomic status.
“Perhaps the most conspicuous crisis in women’s health
care today lies in the disparities in access, diagnosis and treatment
that women experience when they are ill,” explains Rose S.
Fife, MD, director of the National Center of Excellence in Women’s
Health at the Indiana University School of Medicine and the Barbara
F. Kampen Professor of Women’s Health.
How can the medical community reach all women – particularly
underserved populations such as minorities and the rural poor –
educate them, understand their specific cultural concerns, and provide
them with the best health care possible? How can the gaps between
the haves and have-nots be closed?
Dr. Fife and her staff and collaborators are answering these questions
in dozens of ways through their outreach and clinical projects at
IU’s CoE. The center is one of 21 in the country established
in the late 1990s by the Department of Health and Human Services’
Office on Womens Health. Each of the centers is charged with the
task of improving women’s health care in its community, while
serving as a national model in the pursuit of comprehensive, up-to-date,
and user-friendly clinical care for women. The federal government
placed a special emphasis on diversity by mandating that all centers
direct special efforts toward those women who, for reasons of age,
race, ethnicity, socioeconomic status, or sexual orientation, are
likely to be at risk for less than optimal care.
Dr. Fife, IUSM, who is also associate dean for research, acknowledges
that progress is slow, but she says women’s health care is
improving in this country. “One example is that women are
more likely now to be accurately diagnosed with cardiac problems,”
she explains, an improvement over the recent past, when heart disease
was considered primarily a male concern. And although she emphasizes
that the numbers are still inadequate, she is encouraged by an increase
in the number of women participating in clinical trials, which often
provide lifesaving access to cutting-edge medicines and treatment.
Responding to Real Needs
But the needs still are enormous. Disparities in women’s
health-care outcomes are strongly affected by factors like socioeconomic
status and ethnicity, as well as age, sexual orientation and rural
or urban living conditions. Like the Hispanic woman who puts off
a trip to the doctor after discovering a lump in her breast, many
underserved women may not receive a diagnosis in time to benefit
from any form of treatment, much less participate in a potentially
lifesaving clinical trial. Dr. Fife explains that the center has
identified African-American and Hispanic women as underserved, high-risk
populations in Indiana, but it also targets rural women in isolated
regions of the state.
Dr. Fife and her colleagues must listen carefully to community
health-care educators and providers, particularly those working
on the front lines with underserved populations, to set basic priorities
and establish programs. “From listening, it’s clear
that we need to be focusing on domestic violence, weight management,
smoking cessation, and HIV/AIDS,” she says.
Reaching African-American, Hispanic and rural groups requires sensitivity
to at least three distinct sets of cultural concerns – attitudes
about disease and treatment, body image, and language and literacy
issues. For example, to encourage Hispanic women to participate
in preventive breast cancer behaviors, the center wrote a grant
to develop a Spanish-language video on breast cancer screening and
prevention. The grant included funds to support a Spanish-speaking
outreach coordinator, who worked closely with the center’s
research coordinator, Victoria Champion, DNS, RN, of the IU School
of Nursing, to develop a screening and prevention education program.
Amazingly, this simple program consisting of a Spanish-language
video and one outreach coordinator significantly has increased the
number of Hispanic women receiving mammograms at Indianapolis’
Wishard Memorial Hospital.
HIV/AIDS research is another crucial focus for the Women’s
CoE. The disease is prevalent among African-American women and growing
more so among Hispanic women. Funds from the National Institutes
of Health AIDS Clinical Trials Group in 2003 helped the center begin
developing methods to recruit Hispanic women into HIV/AIDS clinical
trials. Dr. Fife emphasizes that the participation of women, particularly
underserved women, in clinical trials would greatly advance the
general goal of improving all women’s health.
Funded by Johnson and Johnson and the Nina Mason Pulliam Charitable
Trust, the center now supports two part-time, Spanish-speaking outreach
coordinators who educate minority communities about the advantages
of participating in clinical trials, as well as providing health
and wellness education in general on issues such as HIV/AIDS, domestic
violence, breast health and diabetes/obesity.
“African-Americans and Hispanic-Americans have a historic
and justifiable reluctance to participate in trials because of past
abuses,” Dr. Fife says. “African-Americans in particular
have a lingering fear of being experimented upon. But we need to
educate, to let these groups know that there are critical, lifesaving
advantages to clinical trials that they should not miss out on.”
Team Oriented
The Women’s CoE staff understood from the beginning that
improving women’s health in Indiana would be a cooperative
affair. Collaborations with existing
community and state health agencies and organizations, as well
as with other IU schools, including Nursing, Dentistry and the IUPUI
School of Science, have enabled the center to offer an impressive
array of educational and clinical resources for women.
Dr. Fife is quick to acknowledge the contributions of the center’s
project coordinator, Tina Darling, who works with the center’s
partners to come up with creative ways to reach deeply into underserved
communities.
A number of the center’s outreach, clinical and research
programs focus on two of Indiana’s top women’s health
concerns: obesity and smoking. In recent years, Indiana has ranked
second in the nation in the prevalence of smoking among women and
first in obesity. “People don’t necessarily realize
that these two problems are interrelated,” Fife notes. “Women
often use smoking as a means to control weight.”
She is pleased with a highly popular weight management program
sponsored by the CoE’s Women’s Health Clinic at Wishard
Hospital. The Center for Comprehensive Weight Management offers
dietary counseling, exercise, group support sessions and other types
of weight management support to the public and serves large numbers
of African-American women. The program was created by Ann Zerr,
MD, associate professor of clinical medicine and the center’s
clinical director, who received support for the project from several
sources, including the Indiana State Department of Health and, more
recently, HHS.
Even with so much outreach and so many collaborations already established,
the Women’s CoE is working to expand its impact. “Because
we are primarily centered in Indianapolis, there are a lot of women
we’re not reaching,” Dr. Fife admits, adding that she
and her staff are working to strengthen its statewide network.
Research, Recruiting & Retention
Yet another component of the center’s mission is fostering
women’s health research and supporting the careers of women
in academic medicine. In the Women’s CoE mission statement,
the HHS Office on Women’s Health strongly encourages each
center to “develop a research agenda linking basic science
with clinical care, and to foster the development of careers of
women in academic health centers.”
The Women’s CoE has a deep commitment to the task of improving
recruitment and retention of women faculty and students within the
IU School of Medicine. The center sponsors a student-faculty mentoring
program, in which a significant number of female medical students
are mentored by female faculty. It also contributes to and supports
the activities of the IU Student American Medical Women’s
Association, which sponsors special programs for women medical students.
Recent funding successes also support two important positions for
women faculty at the School of Medicine: the Barbara F. Kampen Chair
in Women’s Health and the Doris H. Merritt Lectureship in
Women’s Health.
While the Women’s CoE programs target many different women’s
health problems, what they have in common is ingenious simplicity.
With effort, many could be replicated in other communities. In the
center’s compilation of workable good ideas, the beginnings
of a national model for comprehensive women’s health care
are evident. But change comes slowly, and funding, even for good
ideas, is a perpetual challenge.
“I am not, by nature, an optimist,” Dr. Fife says,
with a laugh. “But I think there are enough people out there
who understand the importance of what we do.”
Deborah Galyan is a novelist and freelance writer in Bloomington,
Ind. This article, which has been updated, originally was published
in the Indiana University Research and Creative Activity Magazine
and appears here with permission. For more information about the
IU Center of Excellence in Women’s Health, go to www.iupui.edu/~womenhlt.
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